His Story
Our angel Christopher passed away from complications due to Tuberous
Sclerosis which is a rare genetic disease. The National Tuberous Sclerosis
Association is conducting research to find out more about this disease.
Please visit their web site and learn a little more about this genetic
disease. On July 31st 1993, my husband and I went to the hospital
for a routine ultrasound to check the due date of our baby.
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At the time I was 23 weeks pregnant. The technician showed us the hands and feet of our baby.along with other various body parts we asked if she could determine the sex of the baby. She said yes if we wanted know, and yes we did want to know. She told is it was a boy. She then excused herself and said she going to have the doctor look at the films and she'd be back in 5 to 10 minutes. After 20 minutes she and the doctor came back in to check a couple of things. After a moment of looking the doctor showed us the babies heart. There was something wrong. There was an abnormality and at this point he didn't know what it was. But he would have our doctor look at the films and he would be in touch with us. Before we left the hospital , we called the doctor's office to see how long it would be until we heard from him we were told 5 to 7 days. Now the big question was what do we do for a week and how do we tell our families? Our doctor called to let us know that our case was something he wasn't able to handle and referred us to a perinatologist. We saw the new doctor 2 days later. After talking with the genetics counselor and having another ultrasound along with blood workup, they told us that our son had Tuberous Sclerosis. We were shocked and upset but at least now we knew what it was.
After a week of ultrasounds to check the progress of the baby (we had already decided at this point that we would name him Christopher) we were told that he was getting worse. The mass in his heart was growing larger and blood flow was really becoming restricted. I was put on digoxin to possibly thin out the blood and help it flow through the babies body more. After 2 weeks of being on the medication the mass had grown more so I was taken off the meds. There wasn't anything else to be done at this point if the baby was born healthy except for the heart problems we could consider a heart transplant. But for him to be born that healthy I would have to carry him to term. The problem was he wouldn't survive that long. At the rate his heart was failing the doctor said that he could die at any time. We had a second opinion at this time from a pediatric heart specialist, she totally agreed with everything our doctor said. We had a couple ultrasounds done over the next few days. Then on September 6, 1993 at 11:30 p.m. when my husband came home from work we went to the hospital, I hadn't felt the baby move during the day and I was worried. We arrived at the hospital at midnight. I was hooked to the monitors to see how he as doing. He kicked as soon as I laid down. After being on the monitors for 1½ hours we were told his heartbeat was fine. That I was having some very minor contractions but that was normal and it was nothing to worry about.
We left the hospital at 2:00 A.M. We arrived home at 2:30 A.M. only to discover that I had started bleeding. We turned around and went back to the hospital. On the way there the contractions really started. I was 28½ weeks. At the hospital they wanted to try and stop the contractions we said no. After a few scary moments in the delivery room ^i^Christopher Scott^i^ was born at 8:26 A.M. He was taken immediately to the next room where he was revived and moved to the NICU. He was born weighing 4 pounds 7 ounces, his actual weight was estimated at 2 pounds 3 ounces. He had retained a lot of fluid and was very swollen. At 1:30 P.M. we were called to the NICU his heartbeat was irregular and we needed to come over right away. ^i^Christopher Scott^i^ died at 2:00 P.M. in my arms just 5½ hours after he was born. We were able to take him back to room and take pictures and have some family time. I would have to say that one of the hardest things of the whole experience was leaving that hospital knowing that our baby would never come home with us.
^i^Christopher donated organ and tissue samples for the research of Tuberous Sclerosis.